looneymom Posted November 20, 2014 Report Share Posted November 20, 2014 Tyler has 2 more weeks of 3 a week treatments and then he will go down to 2 treatments a week for 12 weeks.The goal is to get down to one treatment a month and eventully stop. Our doctor said this was going to be a long haul but it's much easier than fighting cancer I think. Some of the supplements that we have tried in the past that did not help with symptoms, may have an affect on Tyler now. The Cam Kinese II can affect so many things in the body when it gets to a high level and when other things are high such a glutamate and norepinephrine levels it causes more problems with neuropathy.Tyler has high levels in both of these and our doctor is trying to figure out why. The norephineprine could mean that he is hyperpots but the high Glutamate has him a little stumped. I am thinking this may be causing Tyler's daily headache and scalp pain. Tyler is not celiac or gluten sensitive and we do not eat out. Tyler tried a gluten free diet for 6 weeks and we did not see any changes at all. He has had food allergy testing done and it is negative. We are waiting on the NMDAR receptor test. This test is a little hard to explain but it has something to do with how glutamate is regulated in the body. This NMDAR receptor has also been found in patients that have Lupus and a movement disorder. So it will be interesting to get the results of this testing back. It will be awhile before Tyler's Cam Kinese levels can be measured again. This cannot be done until he is totally off PEX for 3-6 months. Hope everyone is staying warm and having a good day. Quote Link to comment Share on other sites More sharing options...
corina Posted November 21, 2014 Report Share Posted November 21, 2014 Thanks for the update Rachel, sending good thoughts Tyler's way! Quote Link to comment Share on other sites More sharing options...
E Soskis Posted November 21, 2014 Report Share Posted November 21, 2014 I hope the plasma exchange schedule works well for Tyler - I've been on plasmapheresis for close to 3 years now - I have to adjust the intervals periodically - since we've started out with a very cold winter, I've had to increase the exchanges to once every three weeks - hopefully, when it warms up in a few months, I can go back to once/month. The antibody cycle is about a 2-week cycle - I've noticed that increased stress, illness, and the like can cause the antibodies to build-up more rapidly. Quote Link to comment Share on other sites More sharing options...
Annamaus1977 Posted November 29, 2014 Report Share Posted November 29, 2014 All the best wishes for Tyler's way!!!♡♥♡with warm regards from the cold Berlin,Andrea Quote Link to comment Share on other sites More sharing options...
xRobin Posted November 30, 2014 Report Share Posted November 30, 2014 Rachel, best wishes to Tyler. I hope he sees a gradual improvement. Quote Link to comment Share on other sites More sharing options...
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